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Thursday, July 27, 2017

Thoughts on Medical Aid in Dying

Many parents of children with special needs in this province received a swift punch in the gut this week when a news story came out about a mother in St. Anthony who was told by a doctor that assisted suicide was a recommended option for her daughter. Here is a link to The Telegram article and a related article on CBC.

The
Coalition of Persons with Disabilities - NL has released a position
statement in response to a recent article in The Telegram around Medical
Aid in Dying (MAiD).
Coalition Executive Director, Emily Christy, was deeply troubled when
she read the article “Repulsed by Suggestion” (Section A6) on July 21,
2017. In her Letter to the Editor of The Telegram, Christy voiced the
following concerns:

“I could not believe what I was reading. A doctor in St. Anthony had
offered Medical Aid in Dying (MAiD) to the mother of a woman with spina
bifida, cerebral palsy and chronic seizure disorder. Just finishing up
the night before, we were talking about ways the federal government can
work towards making our country more inclusive, breaking down barriers
and fighting attitudinal discrimination and stigmas against persons with
disabilities and the next day, I read about an overt discriminatory
situation happening right now in our province.

Here’s why this situation is a human rights issue. In Canada, we now
have legislation that allows for individuals to request Medical Aid in
Dying. There are important and clearly essential safeguards in place
that ensure an individual’s rights are upheld and that coercion is not
factored into an individual’s decision to make that choice. Now, it
should be clear that I have deliberately used a very specific word in my
last sentence – CHOICE. The legislation clearly states that this is
about the individual’s choice to have this option considered. It is,
however, not a doctor’s place to offer this as an option. Because that
is where lies the grey area of coercion. In fact, in order for someone
to be eligible for MAiD, it clearly states an individual “make a
voluntary request for medical assistance in dying that is not the result
of outside pressure or influence.” Medical professionals are in a
position of power and their biases can influence someone’s choice,
especially when they make their own discriminatory decisions about
someone’s value and worth—a fate far too often felt by people with
disabilities.

Another eligibility criteria on the list is to have a “grievous and
irremediable medical condition.” This eligibility component is one the
disability community advocates are more worried about. Because, of
course, under this section it says the patient must “have a serious
illness, disease or disability.” And in the case of Candice Lewis of St.
Anthony, she does have a series of complex disabilities, one’s she has
had her whole life – for 25 years. However, it is simply not just about
having a disability that makes you eligible for MAiD. You are required
to meet all four requirements under the “grievous and irremediable
medical condition.” You must also “be in an advanced state of decline
that cannot be reversed, experience unbearable physical or mental
suffering from your illness, disease, disability or state of decline
that cannot be relieved under conditions that you consider acceptable,”
and “be at a point where your natural death has become reasonably
foreseeable.”

The new Medical Aid in Dying Act was assented by the federal
government June 17, 2016. Yet, we have heard little from the Government
of Newfoundland and Labrador on how they intend to ensure the lives of
persons with disabilities are respected and protected under this law. No
parent wants to hear that their child is a “burden” or that they are
“being selfish” for loving them, taking care of them and making sure
their needs are met the best they can. What they want to hear is that
the health authorities in this province are here to help and provide the
best care possible for their loved one and work together to make that
happen.”

When my son, Brennen was born, I remember feeling completely lost and entirely unprepared for what we
were thrown into. I was
terrified of what our future might hold and was afraid to even think too
far ahead. I worried about his quality of life. I worried about the
struggles he would have and the challenges he would face. Would he ever
walk or talk? Would he reach certain milestones?

I know now that quality of life is not measured by milestones or
accomplishments. It is not for others to judge by what one can or cannot
do. If quality of life is based instead on the love and joy that
surrounds us, and the experiences and relationships that are nurtured,
then Brennen has a quality of life greater than anyone I know.

I am sure that Candice Lewis's mom would say the same about her daughter, and my heart breaks for what they have had to go through. Like all parents, what we want most in this life is for our children to grow up feeling safe and loved, and for them to become valued members of welcoming communities. While my son's physical limitations are extreme and his level of cognitive understanding is unknown, his inner light is phenomenally bright. I am grateful for every day that I get to be his mom, and no doctor has the right to suggest otherwise.

2 comments:

I hate to say this, but the law is working exactly as intended. The doctor's mistake: not euthanizing and then claiming death afterward; his other mistake, not asking the 25 year old who can communicate, and then interpreting her answer to suit his aims. A further organizational mistake: the nurse saying the daughter was a 'frequent flyer'. The organization will review to make sure news of this isn't public again. What I find interesting is that no-one has talked to Candace herself in a longer interview. The disabled daughter has been media silenced...but, as I say, everything is normal as the story is presented. I'm disabled myself so I'm not surprised.